Wednesday, March 2, 2011

Visit to State Capital

Today the kids and I went to Albany to meet with our Legislators and Senators for the purpose of asking for their support in limiting cuts to programs beneficial to Alzheimer's patients and their families. As we did in Washington last year, we told our story - over and over again - in all day meetings. This is what needs to be done in order to show the people who make these decisions, that Alzheimer's is a REAL problem and unless something is done soon, each individual state as well as the US Government will become bankrupt in trying to care for Alzheimer's patients.

Some facts:

In NY, the state pays approx. $1,100.00 a year to care for AIDS patients - but only $.70 for Alzheimer's patients.... and if our state continues to cut the programs offered by organizations like the Alzheimer's Association, instead of investing $850,000 a year, it will cost them approx. $14,000,000 a year. Out of the top 10 deadly diseases, Alzheimer's is the only one where the death rate keeps rising (lack of funding for research) and every 70 seconds, someone is diagnosed with Alzheimer's Disease. Alzheimer's Disease is the only disease that has no cure or medicine to slow the progression.

While in Albany, I was awarded the Frank Carlino Advocate of the Year Award. I was truly humbled and honored to receive an award named after a fellow New Yorker who, like Mike, had been diagnosed with Young Onset Alzheimer's and worked tirelessly as an advocate.

The above pictures show me with the award as well as me and Courtney and Brandon with NY State Senator Jack Martins.

About Me

My husband Mike was diagnosed at the age of 36 with Young Onset Alzheimer's Disease. For almost 11 years, my children & I took care of Mike at home - until he passed away on February 28, 2012 at the age of 47. When Mike was first diagnosed, he gave me "permission" to place him in a nursing home, but I chose not to do that. With the help of my children, family &aides, I kept the promise to myself that I would keep him home until the "end". I began this blog about 5 years ago to keep family and friends updated on Mike's condition as he weathered some difficult health issues and hospitalizations. During the process, it became a method for me to vent about issues that directly effected us as a family caring for someone with AD. Nothing along this journey has been easy & I will continue to advocate & be the voice for all those patients who have been silenced by Alzheimer's Disease. NO ONE SURVIVES ALZHEIMER'S, the disease does not discriminate and I will do all I can to make a difference. My faith has been my strength and we have been blessed with MANY angels along the way.
Mike will always be my hero!